NAME: FOX FAMILY FOUNDATION
U.S. HEADQUARTERS: MEDFORD, NJ
Tacie Fox, a co-trustee of The Fox Family Foundation, speaks with HD Insights about the foundation’s efforts to support Huntington disease research.
HD INSIGHTS: Tacie, why did your family create the Fox Family Foundation?
FOX: We started the foundation before my father, Bill Fox, died from Huntington disease in 2007. He owned the largest residential real-estate brokerage company in the tri-state Philadelphia area and was loved by his 3,000 employees and agents. My dad was my mentor and the sort of person who made birthday calls every year to everyone in his company to wish them a happy birthday. Near the end of his life, he was devastated that he had to stop calling them; they thought he was a prank caller because his speech was so slurred. Before my father died, we decided as a family we weren’t going to hide from this disease and dedicated ourselves to promoting and supporting HD research. We sold our interest in the family business and funded the foundation from the proceeds for the sole purpose of helping to find a near term treatment and cure for HD for our family members and other families like ours.
HD INSIGHTS: What types of projects does The Fox Family Foundation support?
FOX: When we started the foundation, our goal was to help support scientists, especially younger ones, to participate in working group meetings, so they could collaborate with one another. We still support that goal by being one of the sponsors for the HSG annual meeting, but now we focus more on funding research that has a potential near-term outcome, such as testing a drug that is already approved for another treatment. We give much more—up to $100,000 more—out of our foundation every year than we legally need to because we know that delays in funding critical research will delay finding treatments that will slow or stop the progression of HD. We are committed to this goal and if a treatment-related project comes forward that we believe can alter the progression of HD now, for those who are currently symptomatic, we would seriously consider using a lot of the foundation’s principal to help support it. We want our money to matter, and while we don’t have the resources to fund a drug trial, we hope that our financial support can help in meaningful ways to speed up the achievement of a critical milestone or provide for expanded research or analysis on an already funded project.
HD INSIGHTS: Why did the foundation shift its mission?
FOX: My sister and my cousin were diagnosed with HD, and they courageously battle the disease as it ravages their brain and impacts their lives on a daily basis. We are terrified for them, and know that the rest of us may have the HD gene as well. Our foundation’s key objective is to help support a treatment that will make a meaningful positive impact on their battle with HD in the next five years.
HD INSIGHTS: Do you have Huntington disease?
FOX: I don’t know. I’ve gone back and forth for years on whether or not to be tested. I know I don’t want to be tested until I’m symptomatic because I am greatly inspired by all of the research, and I feel that I can be more effective in contributing to the fight against HD when I am propelled by hope and knowledge, with a “half-full glass of water” perspective. At times, the fear of the unknown is terrifying, but the alternative (with no current treatment) is to know definitively that I have a death sentence, and that my two boys then have a 50 percent chance of getting HD. I choose to stay positive and continue to actively support HD researchers, while praying that the many brilliant scientists working on our behalf will come through soon—for my sister, my cousin, and everyone else suffering from HD.
HD INSIGHTS: You have two teenage boys, and your sister and cousin both have children. Are you worried about them getting HD?
FOX: Yes, but I really do believe that by the time they’re facing a potential HD diagnosis 15 to 20 years from now, there will be treatments in place. I have confidence that the HD scientists will save them from suffering my father’s fate.
HD INSIGHTS: What areas of research seem most promising to the foundation?
FOX: We are very excited about the use of mutant huntingtin in plasma and cerebral spinal fluid as a biomarker. The fact that these technologies were not feasible just two years ago and now they are being integrated into clinical trials is impressive. It is incredibly exciting and points to the increasing rate of progress in HD research.
HD INSIGHTS: What would you say to the research community?
FOX: That I am profoundly grateful for their passion and commitment. For them, it’s not just a job and a career; it’s a life mission. There are very few people in this world like our HD scientists, who dedicate so much of their heart, soul, and mind to finding a cure that will impact multiple generations across the globe.
